Hi all!
Does anyone know whether you can have a definitive diagnosis for MS? My neuro has basically told me I have progressive MS and a Lumbar would only bump the percentage of diagnosis up from 95% to about 97%…So i’ve checked my critical illness insurance and they have said they will only pay on a definitive diagnosis!
Seem to be going round in circles a bit… any advice??
Chris.
I’m being sent for a LP as part of my DX but I’ll probably be going through the same thing when I get those results so I’d also like to know what they require as enough certainty in the DX.
Hi I was given a definite DX two months ago Got my critical claim in now Gray
Yup but what defines a definitive DX??? As far as I can see and the MS nurse, GP and neuro seem to agree to a degree there is no definitive diagnosis, only a percentage that you have the condition until it reaches latter stages.
i got a payout from my critical illness policy as soon as diagnosed.
never heard of definite ms
carole x
I got paid out from critical insurance after diagnosis. I was diagnosed with it via MRI. I would think if your neuro is saying you have progressive m.s and he has listed it on your mediCal information then that’s all that is needed. I would not put yourself through a lumber puncture as again your insurance co would probably still say well its not definite. To be honest sounds like your insurance company are trying to get out of paying. Mine tried but I threatened to go to the ombudsman … Weirdly they sent a cheque about two weeks later. I have RRMS and at the time the Neuro was saying it was mild, with only a couple of lesions. Don’t give up,put your claim in xxxx
Hi Zed
Simillar position for me. I was told by my neuro on my 2nd visit with him that I had MS and that there was no need for lumbar puncture etc, etc as my MRI, history and neuro assesment was enough to dx me with RRMS. I was appointed a MS nurse and given literature about DMDs to take. I was told to advise the DVLA of the DX as they had to know.
After that visit, about six weeks later I recieved a letter addressed to my GP stating that I had now had a “probable MS” diagnosis. I had my appointment with the nurse, which to be honest was just a “how are you” meeting.
I have critical illness cover through work so started the ball rolling with making a claim. My policy states that you need to have “a definitive diagnosis of MS with ongoing symptoms for more than six months”. I was advised by my HR department that if my diagnosis was not “definitive” then I should not apply yet as in recent cases they had been problems. Also from a personal point, back then I was paranoid about losing my job, my employer knew about my so called diagnosis and I felt covered by the disability act, so this new “probable MS” would have probably rocked the boat a little. So I have been putting off my claim up utill futher notice.
I telephoned my neuros secretary to ask about the “probable MS” diagnosis and she said that this was standard and further tests needed to be done. A few weeks later. I then saw my neuro again who said that my next step was to have a lumbar puncture and he then went on to say that by the time I had the results back from the LP then an oral drug called Aubagio should be available and that he should be able to get clearance on funding for me to start on that medication.
I have just had my LP last week, so I am now waiting for the results. I half expect my neuro to stall again on my next visit whilst he discusses the results and suggest more tests for me to have to take. The problem is now is that I am showing worsening signs of disabillity and losing the use of one of my legs.
I do have a three year driving licence now and get a free flu jab once a year due to my “probable MS”, but there is no sign of a “definitive MS” anywhere yet for me on my notes.
When I do see the neuro next, I will ask him for a letter to confirm diagnosis if that is what I have, once and for all.
My neuro sent a letter to my GP , saying confirmed diagnoses of ms Gray
My neuro told me it’s MS, then explained the difference between RR and PP and asked which I think I’ve got. The letter he wrote to my GP says I have MS, “probably primary progressive.” (I like my neuro, when he writes to my GP about me he sends me a copy of the letter.)
I’ve had an MRI of my brain and spine, an evoked potential test and a lumbar puncture. My neuro’s diagnosis is based on the fact that the results of all these tests are consistent with MS, as are the symptoms I described to him and the tests he did on my balance and reflexes when I saw him. Among other tests, he had me walk heel to toe across the examination room - I couldn’t do it, but I haven’t laughed so much in ages!
The DX was probable when I first saw my GP about my symptoms and he referred me to a specialist. As far as I, my husband, my doctors and anyone else who matters is concerned, it’s definite now.
Mitzi
Thanks all…
May start to get bolshy with the insurance guys, hacked off with it now, done with tests and had enough blood taken to supply the NHS for at least a month, think they had to get another van in last time i had my bloods… have had enough MRI’s to irradiate most of the south east and if I get asked to walk in a straight line, heel to toe, or look at more colour charts I wil make the person eat said chart or make the neuro try to walk the same way.
Right, I’m out to buy Easter eggs for my kids and then get online to book a disgustingly outrageous holiday for me and them…
I shall induldge myself because A:It has been a shitty year & B:They need it as much as I do!
Chris.x
I don’t think you can really have a completely definitive dx of anything in an uncertain world. The best you can have is a dx that is definitive to all intents and purposes - those intents and purposes to include satisfying insurance criteria. That is what most of us have, and that is what you need. If the insurance company is failing to accept your dx, you need to ask them precisely what it is that they need to be satisfied that you have a secure dx for their purposes. As far as I know, MS can only be demonstrated definitively post mortem. Personally, I think that would be taking ‘making the point’ a bit far!
Good luck.
Alison
Hi, there is something called the McDonald criteria for diagnosing ms. I was told probable ms, then I had a lumbar puncture which I hoped would give me a definite diagnosis but apparently it just adds more weight to their probable diagnosis. It was only when I had another MRI after more symptoms that showed more lesions, that I was given a definite diagnosis of ms. Not been told which sort. Seems to be a wait and see but it’s looking like ppms. I don’t know much about it so good luck with getting your diagnosis. Lynn